Sunday 21 January 2018

'Quality of life' should be the main priority

For the parents of children with disabilities, the focus today is still all about the system and it doesn't seem to matter what our children's actual needs are

Frieda Finlay, Chairperson of Inclusion Ireland
Frieda Finlay, Chairperson of Inclusion Ireland
Mandy Finlay with her mother Frieda Finlay
Mandy Finlay

Frieda Finlay

What does "mild" mean? My daughter Mandy is 42 and has Down Syndrome; she would buy and sell you in some ways, is as sharp as a knife in other ways and has an amazing emotional intelligence. But she can still be very vulnerable and needs the necessary supports to live independently.

Her first assessment took twenty minutes when she was six. The result was "moderate ability" - which in those days meant going to a school where she would never learn to read or write. I kicked up a fuss to be told by the senior psychologist that "some mothers have notions about their children".

I persisted and she was re-categorised as "mild", so she did learn to read and has very good functional reading skills which are so important for her day-to-day community living.

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